After Surgery Number 2

What a grueling day. Got up at 5 a.m. to be in Ft. Worth by 6:30 a.m. for an 8:30 surgery time. We were told it was going to take 2 hours. 6 hours later, the surgeon comes out and tells us to go into a private room.

He explains to us what he had to do; describing that the cause of the spinal fluid collecting was because of scar tissue building up from the first surgery. Going on to tell us that he's concerned that she's not showing any signs of movement in her left leg, but it's too soon to draw any conclusions. He told us he had to be very aggressive in clearing the area around the cord and had to touch it several times, which is absolutely what they want to avoid. His words, "the spinal cord was very angry with me today."

This may seem disgusting to describe, but at that moment my body seemed to just unload toxins to the point that it was disgusting even for me. I suppose it was just the stress of thinking of the possibility of our little girl being paralyzed.

Throughout the waiting to actually see Emily, I was updating my Facebook status whenever we received more information on Emily.

Needless to say, we had many people praying and a tremendous amount of relief to hear that her foot was responding to touch.

As soon as we got her situated in a recovery room, I brought Maria Marcela's belongings and headed back to pick up Andrew who was anxiously waiting since he thought it was only going to be a couple of hours.

Andrew and I are home and we just got of the phone with Maria Marcela AND Emily, who was undoubtedly in pain complaining of both of her legs hurting. She did not have the leg pain with her surgery back in October. So, there's obvious signs of the surgeon messing with the spinal cord.

They had just started administering a pain killer while we were on the phone and we're hoping for a restful night's sleep for both of them.

Thank you for everyone's thoughts, prayers and concern.

Second Neurosurgery - A setback

Today is July 1st in which Emily was to have her first surgery to install the veptr and begin her correction of the scoliosis. However, after both surgeons conferring, it's agreed that the problem of this new sack of spinal fluid needs to be addressed. Her surgery is scheduled for this coming Monday morning, first thing while the PreOp is this Friday at Noon.

We will certainly ask for prayers that they do not discover any problems and that the matter of the spinal fluid is resolved and we can move forward with procedures to straighten her back out.

Also, we ask for prayers that insurance will cover the majority of this surgery. I just received word that we're going to be responsible for 20%, which could be to the tune of $15,000. Although it wouldn't be the end of the world, we just simply don't wish to get into further financial straits here. Emily's health and well-being are certainly priority.

Latest Medical News - May 31, 2009

We had a follow-up with the neurosurgeon in Ft. Worth last Tuesday in which he reviewed the MRI taken at Children's Medical Center in Plano. His observation is that there is a new sack of fluid gathering and pushing against her spinal cord which would require another surgery from him to correct.

We are forwarding the same MRI results over to the doctor at Scottish Rite to get his opinion and we determine the next steps. Interestingly, at the same time, we finally got a scheduled surgery date for her to begin her scoliosis treatments/surgeries. The first one is set for July 1st, in which we're going to keep for the time being if the second and third opinions on the sack of fluid prove to be threatening.

The neurosurgeon mentioned that he's seen patients go on to have the spine surgery to begin straightening only to be paralyzed due to other circumstances, such as this, still outstanding.

The other thing he said was that he could not tell for sure, but he wanted to make sure that one of the unfused areas of the spinal cord to the vertebrae was not refusing itself back. If so, then that would need to be addressed as well.

So, as you can tell, this little girl certainly has a road of herself, little is she aware. She remains a happy child regardless. Stubborn and incorrigible to say the least. Everything is normal on that front. We hope to hear from Scottish Rite of their opinion and if it's opposite of the neurosurgeon, then we may be seeking a third opinion to break the tie.

Lots of praying as you can imagine.

Enough negative, let's look at Pure Cuteness!!

CT Scans Reveal Everything

You may want to sit down for this. Here's the reality of Emily's bone structure. First, the back view...
...then the front.

Plans for Next Surgery

Week before last, Emily was seen by a series of doctors at Scottish Rite hospital in Dallas where we had discussion about her condition. We were finally able to see x-rays for the first time to prove what we all had long since suspected. I suppose we were a little in denial of the fact that her ribs and spine were so malformed. The evidence was clear though. On one side, she had all her ribs in somewhat of a normal fashion. However, the other side revealed a batch of ribs, maybe 4 or 5 all fused together in one mangled mess and then at the bottom, missing about 4 ribs altogether.

The doctors are not wanting to be too hasty in proceeding I've mentioned previously, but, at the same time, it's prudent to begin correcting her crooked little body as soon as possible, particularly in this crucial growing and development stage.

According to the doctor's comments this week, he is going to try and schedule her for surgery as soon as he can fit her in, maybe within the next month. They will afix her with a contraption called the veptr. I have copied a photo a model in which the ribcage is malformed. This one does not really look like Emily's. Her's is somewhat worse. The illustration shows the veptr that will be attached directly to her ribs and spine, beneath the skin.

And thus begins the agony of correction. More than likely a surgery at 6 month intervals until who knows when.

Here's a link to information regarding the veptr:

http://veptr.com/

I forgot to mention and I had wanted to write about this right after we met with a 19 year old young woman going to Texas State University, I believe. Anyway, she and her mother came over a couple of weeks ago to discuss her going through similar ordeal and all the surgeries. I forget how many she said she had, but I want to say 34. I should ask her if she minds me mentioning her name or posting a pic of her before I do so. It was a great visit.

Status - February 25, 2009

Well, Emily had her post surgery follow up with Scottish Rite in which some x rays were taken of her back and she met with the doctor. He explained that they're not going to rush into any surgery at this time without making some calculated decisions. Which would, or at least hope to be the expected path anyway.

Her next appointment is to be seen by a team of specialists at the hospital in mid March. Scottish Rite had received the report from the doctor who performed the spinal cord surgery, so they've requested those which will help in their decisions.

One thing that seems to be of interest here is that they are wanting more time to allow the body to heal itself before performing corrective surgery on the spine. Another aspect that we didn't realize before is that there is, more than likely, malformation of the ribs due to her conditions that she's had since the very beginning of her development.